Ha. Remember what I described last time as a clusterfuck? Well, I was wrong. That wasn’t a clusterfuck. Not by a longshot. In fact, compared to what happened just a short week after that hospital visit, my visit to Robert Wood Johnson was a walk in the park. A stroll on a sunny day.
So what went down? A few days after being released from RWJ, I noticed a pain on my right side. It thought it was a muscle cramp from having to spend a night sleeping on my back (something I never do) in that UNBELIEVABLY uncomfortable hospital bed. I shrugged it off as nothing.
A few days after coming home, I received my month’s supply of Thalomid that my doctor wanted to take to try and spur my bone marrow into normalizing production of everything. Have you ever heard of Thalomid aka Thalidomide?? Do you remember the flipper babies from the 60s? Yeah, it’s THAT awful. In fact, when Dr. Stadtmauer proposed me taking the meds, I had to sign a release saying that if I was going to bump uglies, I would have to use at least TWO different forms of protection to make sure that there are no pregnancies. The list of OTHER possible side effects wasn’t so fun, either. Neuropathy (where you can’t feel your hands and your feet) and the possibility of forming blood clots (with my platelet count over a million, this was a huge concern for me). Who knows how my body was going to react to this stuff.
Because this stuff is so scary, everyone (read: Chumki Mashi and Mou) came to the decision that I would stay at my sister’s house Thursday night when I was scheduled to take my first dose so that if anything went wrong, I wouldn’t be alone (like the RWJ incident). I agreed. The plan was simple. I would go down to Mou’s house Thursday night, take the meds, and assuming everything was alright, I would come back Friday to be with Anita for the weekend.
I was DETERMINED to be as normal as possible that weekend. I wanted to go with Anita to the city to see the tree and go ice skating and eat in chinatown and JUST BE NORMAL for once, just for a short period of time. I hadn’t felt normal in such a long time, I craved it. Of course, that was far from in the cards.
Here’s what went down.
Thursday night, before I even took anything, that pain in my side became almost unbearable. I didn’t say anything to my sister. I lied. She saw that something was wrong, but I didn’t want what I perceived to be a muscle cramp to derail my plans for the weekend. I CAN’T BE THIS FRAIL! I just can’t. I tried to lay down flat on her couch and the pain was absolutely excruciating. I still held onto the belief that this was just an amazing muscle cramp that didn’t want to let go.
Thursday night rolls by. I take take the pills. My sister, being the absolute uncontestable champion of all this to this point, actually slept downstairs in her living room with me so that I wouldn’t be alone that night. The medicine made me feel terrible. The neuropathy was real. The tingling, numb sensation I felt in my hands and feet after about an hour made me feel absolutely disgusting. In my head, I couldn’t believe that this was going to be my nightly routine for the foreseeable future. Talk about FML. It was at this time that I tried to lie down and discovered how bad that ‘muscle cramp’ really was. Instead of lying flat with my head on the armrest, I sat upright on the couch and reclined. It wasn’t the most comfortable position, but it was doable. I slept. I was uncomfortable, felt disgusted by the neuropathy, but I was good enough to go to sleep. No major damage that night.
Friday morning, I wake up and everyone’s already gone. The uncomfortable feeling in my side was now really uncomfortable. To the point where it kind of made me nauseous and made me want to keep my movements to a minimum. This fact that moving around aggravated the problem solidified in my mind that it was the muscle cramp from Hell. I was dreading the drive home, but I was absolutely determined to do it.
When my sister got home from work around 4:00-ish, I think she sorta guessed something was up because I hadn’t eaten anything and I guess I just looked uncomfortable. She made me prove to her that Anita was coming over that night and that if she wasn’t coming, I wasn’t allowed to go back. After confirming that Anita was indeed coming over to be with me, I was allowed to leave. I was really dreading having to drive home. Having to sit there driving for what should’ve been an hour and fifteen minute drive, I didn’t want to do it; I kept delaying. Finally, at around 6:30, I realized I really had to get on the road if I wanted to execute my plan. I wanted to surprise Anita by cooking her a late dinner for when she arrived (she was supposed to be home at around 10:30-ish)
I leave my sister’s house. Kind of begrudgingly. The pain while sitting in the driver’s seat is immense and almost intolerable. I just hoped that I could fly up the Turnpike and get out of that position. Of course, disaster! As soon as I get on the Turnpike, there’s traffic. And when I say traffic, I mean RIDICULOUS the kind you NEVER see traffic on the Turnpike. It was PARKWAY traffic. I couldn’t believe it. I had hoped to get around 80 MPH on the way home, I was lucky to be doing 25 at times. All the while, the pain was mounting. It jerked tears out of my eyes and I winced involuntarily from time to time. It was awful.
After two hours and only making it about 1/2 the distance, my plan was obviously shattered. There would be no way I could make it back in time to prepare absolutely anything. I figured I’d look at the glass half full, right? I pulled into the Woodrow Wilson rest stop on the Turnpike and set my sights on a DELICIOUS Gold Rush Chicken Sandwich from Roy Rogers. Definitely making the best of a bad situation.
The place was PACKED. I guess I was not the only one seeking refuge from the traffic. Not wanting to deal with the having to fight for a parking spot, I just parked far away. It’s not like I couldn’t use the exercise, right? I get out of the car and I can barely walk. Each step I take, it feels like a fire is burning up my right side. Starting right at the small of my back, wrapping around to the front of my rib cage, and extending all the way to the top of my shoulder. I take a very slow pace. After what feels like an eternity of pain, I get my sandwich and retreat to the car. I figure the best move would be to eat and drive. While walking back to the car, I thought I might pass out. Every single step I took felt like I was being punched by Mike Tyson. It gets to the point where I almost vomited when I got back to the car. I didn’t actually throw up, but I spent about 2 minutes dry heaving because of all the pain. But I trekked on. I got back in the my truck and got back on the Turnpike. Still packed. I must’ve lost at least 3 years of my life because of the pain I went through while driving for those 3 hours. And yes, it was THREE HOURS of driving.
I get home and had only one thing on my mind. Hot, massaging shower. The combined heat and pressure really put me and ease and gave me some relief from the pain. I sat on the recliner and waited for Anita. What I feared now was worse than just not going to spend a day in the city. What I feared now was that I would have to return to the hospital. I wanted to avoid this at all costs. I mean, ENOUGH with the hospitals already, OK? I get it. I’m sick. Do I really need to go to the ER every weekend and be hospitalized EVERY week just to prove it? Can’t I be sick in peace?
No. Anita arrived and after about 4 hours of jostling and trying to alleviate the pain, after I tried to lay down next to Anita finally to sleep and felt so much pain I almost threw up again, I knew. I knew I would have to go back to the ER. At this point, I had already ruined my ride to the hospital in Anita. The poor girl herself wasn’t feeling well when she came over and after my second shower (and my brash decision to not go at that point), I told Anita that it would be fine for her to take some Nyquil to try and help her with her congestion and her cold.
It was about 1:00am and I was in so much pain, and poor Anita felt helpless as she battled the fatigue brought on by the Nyquil. Lucky for me, there are people everywhere looking out for my well being. I called Chumki Mashi and she came right over. There was actually another small convention at the house of our family friends to assess my situation and to figure out who exactly would be making it to the hospital. The hospital party would include Chumki Mashi, Saikat, Anita, and of course, the patient.
My doctors here in Edison had already kind of thrown in the white towel and both suggested that we go to the ER at UPENN instead of at JFK as the situation would be better handled by Dr. Stadtmauer. That’s exactly what we did. So, for those of you keeping score, I drove UP from my sister’s house (20 minutes outside of Philadelphia) only to make it back to Somerset and drive BACK DOWN to Philadelphia a few hours later. All in the name of trying to have a normal weekend. Normal. I think I have to come to terms with the fact that THIS, everything that I’m going through right now, the uncertainty, the pain, the discomfort, THIS is going to be my definition of normal for a while. *sigh*
When we were closer to UPENN, my sister was informed of what was going on and again, like the champion she is, met us in the ER. We were admitted in minutes and when we got into our room, I was pumped full of dilaudid which granted me some real relief from the pain. But that’s of course, where the next chapter begins.
What’s the aftermath? I was hospitalized for about another week. Why? Blood clots and blood had filled up the lower portion of my right lung. Yep, even though I was on the blood thinner, it STILL clotted and STILL almost killed me. I keep thinking back to what might’ve happened had I decided to “tough it out” and just spend the night on the couch or something. What if I had been stubborn enough in my desire to avoid hospitals to not give in to the pain? Scary, but then again, these brushes with death are becoming a little too commonplace in my life.
My mother and my cousin changed the dates on their return tickets from India and returned within that week that I was in the hospital. It was decided that I would no longer be on an oral blood thinner, but instead, I would inject myself (daily) with a medicine called Fragmin to act as an anti-coagulant. Dr. Stadtmauer now put me on a combination of dilaudid and oxycotin so that I could try and breathe as pain free as possible.
Lucky for me, I was released on Christmas Eve. All I wanted was SOMETHING normal and I was SO excited to be able to have Anita’s family, my sister’s family, and my family together at my mom’s house for Christmas. And it almost didn’t happen. When I got home, I wanted to go food shopping, but just plum forgot how early stores close on Christmas Eve. By the time I felt rested enough after returning from the hospital, the stores around me had ALL CLOSED. It was absolutely horrifying. I drove around with my mother trying to find and open store with no luck. The only store that was remotely open was Walmart, but even that was closing in 1/2 an hour.
Of course, like the unsung hero that she is, Anita jumped to the rescue. She, in PA, jumped in her car with her brother and mother and rushed to the Walmart in East Stroudsburg (the one complete with grocery section) and ABSOLUTELY saved Christmas. They bought turkey and ham and really really saved the day. I can’t stress that enough.
Christmas Day, I was loopy all day from the drugs, I was in pain most of the day because the meds don’t actually make ALL the pain, but just dull it enough so I can barely function. But even with that, it was one of the best days I can remember in the last 6 months. Everyone put a lot of effort into doing their part for that day and it was incredible. I finally was able to get a glimpse of that elusive sense of normalcy.
And that’s my life, now. In search of normalcy. I’ve been reduced to sitting on this recliner, sleeping all day and all night, trying to find a sense of anything. I go from pill to pill, injection to injection, just trying to hold on.
My condition has vastly improved over the last week. I’ve been taking about 1/2 the dose of pain killers I was taking last week and actually spent the last 2 nights sleeping in a bed. I want to get excited about an improved state, but I’ve been down this road too many times to feel optimistic. I don’t think I can even define the word optimistic at this point.
I hope this week will be healthy enough for me to enjoy it a little… If there was ever a week that I would like to have with little to no issues, this would definitely be it.
Here goes nothing.
